Rheumatoid Arthritis Guy is extremely flexible. Since I live with rheumatoid arthritis, this can be both ironic (to me) and misleading (to others).On one hand, I have joints that stiffen up and snap on a regular basis. On the other hand, my body has always exhibited signs of super elasticity.

My nickname at my last yoga studio was “rubber man”. My nickname at my current yoga studio is “bubble gum”.

I try to not draw too much attention to my flexibility, but when I throw my knee over my shoulder or do a forward bend that might make some Cirque du Soleil performers jealous, I guess others do tend to notice. (And I’m sure there is at least one person in the room who thinks: There is absolutely no way he can have arthritis!)

My first rheumatologist always asked me to bend forward and touch me toes, as part of my routine physical exam. I always thought this was sort of silly, as even during my worst flare days I can still place my hands palm down on the floor in front of me. No matter how much I told her that this should not be used to evaluate my current state, I don’t think she ever really listened to me. (She always thought that I might have ankylosing spondylitis, but after every part of my body except my spine showed signs of inflammation, she finally dropped that theory once and for all.)

While my physical flexibility continues to be a great benefit, it hasn’t been nearly as important as the lifestyle flexibility that I have learned to incorporate into my days. At times it feels like my choices are limited to either/or. I am learning, however, that there are many other options in between. By exploring these alternatives, I can often find a healthy and enjoyable balance between “doing too much” and “doing nothing at all”.

Tardiness

In general, I am a very punctual person. I dial into conference calls two minutes before the meeting start time. I get to yoga class ten minutes early so that I may set up my mat and do some light stretching. I arrive at my doctors appointments five minutes before the hour. And according to the type of social event I am attending, I arrive either at the appointed time or during the range of what is accepted as fashionable lateness.

Now that I live with rheumatoid arthritis, rarely does my punctuality reach the precision of minutes. If I hit the target withing half and hour to an hour, I am happy. (Although I do make an exception for my medical appointments, as I don’t want to lose a minute of the time that has been set aside for me.)

There is a direct relation between how I am doing physically, and how long it takes me to get ready to leave the house. (Rheumatoid Arthritis 101.)

For me, it’s not out of the ordinary to spend twenty minutes putting on my ankle braces and shoes. (Even at that, I still have to take a short break between each of the four items, six if we’re counting socks.) Almost half an hour, and we’re only talking about my feet!

I now set aside an hour to get ready, for what used to take me ten minutes. (Depending upon my current state of dress, I might even have to give myself an hour and a half to get ready.) I like to try to get in at least a thirty minute nap before I leave the house. Add in transportation time, and this means that I often have to start getting ready at least two hours early before any appointment.

Arriving on time can sometimes be a challenge. (It can also be an additional stress on top of what I already have to deal with.) Needless to say, I have learned the importance of allowing myself to be late. Although I don’t think I take it to an extreme of “irresponsibility”, it certainly has made things a little easier.

Of course, different types of events require different lead times in which I need to notify the person that I am going to be late. But ,I have generally found the person on the other end to be quite accommodating (even more accommodating that I expected).

I’ve even had dinner plans postponed by more than two hours. One evening I had some ankle stiffness that wouldn’t go away. I didn’t want to cancel dinner plans, so phone calls went out every half hour between friends and the restaurant. Things eventually got better, and a couple of hours later we were all sitting together. This was much nicer than just canceling outright (I was visiting from out of town, so rescheduling for another day was not a possibility). My friends actually confessed to me that the unscheduled delay actually ended up working in their benefit, as well.

While we live in a culture that praises punctuality almost down to the second, it may seem odd to try to introduce variable tardiness into the equation. But by doing so when necessary, it has made my days easier and has allowed me to continue to take part in things I enjoy – even though I just might be a little bit late in doing so.

Change of Plans

Plans have been made days ahead of time, but the morning of the event I wake up with a horrible flare. From experience, I know that things are not going to get any better as the day progresses. What should I do? Sometimes, it seems easiest to just call and cancel. Although in the end, this really isn’t that much fun.

Once, I promised a group of friends that I would invite them to my house and cook dinner. As the date neared, my grand dinner menu continued to shrink both in size and complexity. The evening before I finally accepted that I wasn’t even going to be able to prepare microwave popcorn, much less anything resembling a dinner.

My first reaction was to cancel, but then I thought: Why don’t we go to a restaurant instead? I reserved a table at a nice restaurant, and then called my friends to let them know about the change in plans. The evening ended up being a blast, and I still look back at it with fond memories.

Sometimes I do the exact opposite. Plans to go to to a favorite neighborhood restaurant turn into take-out and dinner at home. Things changed, but the highlight of the evening remained the same: good Thai food (my absolute favorite).

I am also learning that sometimes a change in plan means cutting out Activity A in order to be able to do Activity B. By prioritizing, I am able to pick and choose those things that will be most meaningful, and accomplish those. There are many days where, if I leave everything on my plate, I end up getting through none of it. Less truly is more.

By bringing more flexibility into my life, I am realizing that I can overcome some of what I originally perceived to be restrictions of my life with rheumatoid arthritis. The limitations of fatigue used to be a hard wall that surrounded my days; now they have become blurry boundaries. Sure, they are still there – but as long as I don’t bump up against them so often, they do seem to begin to fade a little into the background.

*****

One doctor told me that my (physical) hyper flexibility was actually a symptom of my rheumatoid arthritis. Has anyone heard this before? (I have had a lot of this flexibility since I was a child.)

I have also had the ‘hyperextensive’ term used with me. As a child I entertained my friends with my flexiblity even though I had Juv RA. My hands are very distorted, major swan necking, many operations just so I can use them somewhat, yet I can still push my thumb to my wrist and I have nodules all over my wrists. I can pretty much still get my ankles behind my neck but that is somewhat painful these days since I not only have RA but in the last year Osteo in my back and hip. My hips actually feel better if I bring my knees as close to my head as possible.
I have been told by other RA people that they were previously very athletic which I was in my teens and 20′s, triathalons, swim team, etc.
Also another connection I found with other RA people is that a number of people including me got chicken poxes at least twice as a child, I had it three times much to the shock and horror of my family doctor, I will never forget his face when he diagnosed me for the third time. Has anyone else have these three things, hyperextension, background of sports, and faulty immune system as a child ? Or perhaps some other things that we have not thought of.
Another one I am researching is adults whose mothers took Thalidomide. Many of those who survived are out there in the world and from what Ive read, its possible many of them are experiencing increased autoimmune diseases and earlier in life then the average.
Anyways, good topic, one I’ve wondered about and researched somewhat; what else connects us?

I’ve had RA since I was 2. I’m 35 now and yep I’ve always been hyperflexible. One of the many odd symptoms I’ve had including multiple chemical sensitivities, permanent voice loss and lung damage. It’s a real crazy disease!

WitchlimBkue: I was a dancer for 10 years before I was forced to quit. I’ve never hahad chicken pox though although my siblings and friends to give it to me many times. I have however had pneumonia more times I can count. So there maybe something to your illness theory. Maybe just not solely chicken pox though.

Such a hard thing to give yourself at times, flexibility. With 3 kids if I am not constantly cleaning behind them, the house looks like a tornado hit it. I have OCD as well (I just love Lyme and its variety of manifestations) so every toy on the floor, every dish on the counter screams at me. It’s a work in progress for me to accept that some days it just isn’t going to get done.

The physical flexibility is interesting – my 5 year old constantly entertains us with touching her hands together behind her back and other tricks. It can be a symptom of the genetic disorder Turner Syndrome, which research is finding has some connection with autoimmune diseases in general and Juvenile Rheumatiod Arthritis. Many patients with Lyme also suffer the effects of RA, and I wouldn’t be surprised if it was later linked to a past untreated infection of some sort. Wish we could fast forward a few decades and see what research has finally sniffed out.

Yep, been told that too. Does anyone have a family history of Autoimmune problems. My father has a very severe case of RA, my sister just barely survived a Autoimmune hepatitis battle, and I have RA, Sjogren’s, AIED, and thyroid problems. My sister and I both didn’t develop these conditions until just recently but my father has suffered all of his life.

I’ve also always been pretty super flexible, and even when my strength and range of motion diminished from the RA, my flexibility was generally not so affected. I haven’t heard about it being related, but that’s interesting to ponder….

as for learning to be flexible in other ways, sooooo many good points. I’ve also learned to let go of some of the (arbitrary?) expectations I had about things before, but it still trips me up sometimes.

Be careful with your hyperextensibility! When you extend a joint beyond the range it’s really supposed to go, you start damaging it. I suspect none of you guys have had the kind of impact I’ve had, where my joints dislocate freely, but that’s what hyperextensibility can become if it’s not minimized!

It always makes me cringe when people describe showing off their hyperextensive tricks, because I live with the kind of damage that is being done. You increase the likelihood of OA and dislocations, as well as general instability.

It is far healthier for your body to try to restrict your movements to ‘normal’ range of motion.

As for scheduling flexibility…oh, I can’t live without it. I am lucky in that my boyfriend accepts without question that when my body can’t do it, it just can’t do it. I have not been so lucky with classes – I had a professor threaten to fail me because of classes I had missed and classes I was late to. I think the fact that I had a minor nervous breakdown in the dean’s office may be all that saved me from being flunked.

Yeah, I was one of those kids who used to bend my fingers backwards for show…

It feels nice when people around us go along with the change in plans when necessary, no?

On my last visit to my rheumatologist he showed me a model of a knee model, and showed me what happens when you overextend your knee (it had rubber tendons and all.) Since then, I’ve been very careful about not overextending when I am exercising.

I sure hope that being hyperflexible is not related to RA. My daughter complained of joint pain (still does) and with my and my family’s history of RA and other autoimmune dx’s, she was seen by a pediatric rheumy. He dx’d her with hypermobility. We were told that since she is so flexible, her joints will hurt. She can do unbelievable things with her body, is very athletic but is in pain a lot of the time.

hi!
Question. I am also hypermobile..although not to your extent but I do have very mobile joints and am very flexible. I also have rheumatoid arthritis. I go swimming as I am told this is a good way to get exercise without putting too much pressure on my joints…but at the same time, they don;t have the support they need (like when I wear a knee brace or gym shoes) to stay in a ‘normal’ position..so I have overstretched my knee and ankle on several occasions as they can move in any which way direction in the water lol.

Have you had this? do you think it makes it harder to treat/ live with or do you think its a blessing you have that flexibility most people lose when they get RA? Are regular treatments working for you?

I’m just curious…I’ve only had it for about a year and 3 months and I am eager to find out as much as possible.